Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 - Ours said that & we did the same as Steph Peta - As far as I know, none of us live in Chelsea and Westminster thats why it has to go through the PCT. Write them a letter about your sons pain and that you cant stand it any more, or call your GP, start crying etc & make sure you do your dam best to get the app. Put the pressure on. Lara x > > > > > > Hi all I have received a letter for my first appointment with Dr > > Fell, > > > but am a bit worried that the letter says " You have an > appointment > > to > > > see a member of the Paediatric Gastroenterology team lead by Dr J > > Fell " > > > and that I wont get to see the man himself. This presumably is > > > standard wording, has anybody referred to him actually seen > someone > > > else, just wondering if I should be phoning them insisting we see > > the > > > man himself, dont want to be a nuisance before I even get there > > > x > > > PS The appt is for 14th Dec, so he must have got through his > waiting > > > list quickly > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2007 Report Share Posted November 22, 2007 She's ok but probably doesn't like me now plus she talks to my old paed ( who is evil). She says lots of kids have bowel problems and that's the way it is. She's not interested in diet, his improvements, basically she just follows the party line. Thanks i will tell her that info. Peta x- -- In Autism-Biomedical-Europe , Mum231ASD@... wrote: > > > In a message dated 22/11/2007 17:43:34 GMT Standard Time, > peta3366@... writes: > > I have just had an emotional phone call with my paed about referral > to DR Fell. She wants to refer me locally and I said they would just > say that Charlie is fine rather than investigating. She said she > would try but had to go to her business manager and the PCT. I live > in East Sussex and the PCT has never said yes to anything yet. > She asked if I could give any info about Dr Fell as to why he would > be the best person to see Charlie. Any ideas? > > > >>Because he ignores the fact the child has autism and investigates > appropriately based on what he sees in the child. > > This is way different from GI's who see autism first and feel bowel issues > are too 'political' to deal with. > > Dr Fell will NOT discuss autism with you, its not what he is interested in, > just bowels, in essence he treats the child not the diagnosis - and he's > probably the only one in the country so no other GI will do > > Is this paed a nice lady? > > Mandi x > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2007 Report Share Posted November 22, 2007 Has he put your son on pentasa Steph? sorry if you have already posted this - I'm in a bit of a muddle. And if so how is he doing? Peta--- In Autism-Biomedical-Europe , " stephaniesirr " wrote: > > Yes Mandi is right, he's not that interested in autism, he's just > seeing a lot of it in his waiting room, becoming an expert by proxy. > But he does pretty much acknowledge autistic enterocolitis, which is > now going to be a broader term to cover the whole area of course. I > wish they'd hurry up > > Steph x > > > > > > > > > > > > > > > Hi all I have received a letter for my first appointment with > > > Dr > > > > > > Fell, > > > > > > > but am a bit worried that the letter says " You have an > > > > > appointment > > > > > > to > > > > > > > see a member of the Paediatric Gastroenterology team lead by > > > Dr J > > > > > > Fell " > > > > > > > and that I wont get to see the man himself. This presumably > > > is > > > > > > > standard wording, has anybody referred to him actually seen > > > > > someone > > > > > > > else, just wondering if I should be phoning them insisting we > > > see > > > > > > the > > > > > > > man himself, dont want to be a nuisance before I even get > > > there > > > > > > > x > > > > > > > PS The appt is for 14th Dec, so he must have got through his > > > > > waiting > > > > > > > list quickly > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2007 Report Share Posted November 22, 2007 I think Dr Heusckel could refer you. Ask him for a second opinion and when he asks where say ............C & W? Sally Mum231ASD@... wrote: > > In a message dated 22/11/2007 17:43:34 GMT Standard Time, > peta3366yahoo (DOT) co.uk writes: > > The thing is my last paed referred me to Dr Heusckel at the Royal > Free and i don't think the PCT were involved so why is this > different? Do you think that maybe Dr heusckel could refer me? > > >>probably because they (the DHA/PCT) have a block contract with the > Royal Free. C & W probably means cost per case contract and in that case > they look at the referral differently > > Mandi x > > ------------------------------------------------------------------------ > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.5.503 / Virus Database: 269.16.3/1144 - Release Date: 21/11/2007 16:28 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2007 Report Share Posted December 5, 2007 Hi All, Can anyone tell me how Dr Fell helps exactly? Does he do endoscopies? What kind of drugs/supps he prescribes? Would we be better seeing Wakefield’s friend in instead of Dr Fell? My little one started complaining about painful stomach so I am considering all options. Thanks in advance. Remis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2007 Report Share Posted December 5, 2007 In terms of recognising the gastro problems specific to autism, might be quicker with Arthur Krigsman or Federico Balzola. However, Dr Fell is a good doctor and will prescribe similar treatment if he thinks it's necessary - endoscopies etc. THe NHS does not seem to prescribe granular Pentasa so if your child can't swallow tabs, you would get Salofalk but it's the same generic drug. I like Dr Fell but should add the caveat that he is now secondarily examining the slides that Federico created. THe gastro in Nottingham said " no need for treatment " , Dr Fell said " I'd like to see them because Tom presents externally with digestive problems " and now we're in limbo waiting for the result. This is a scope done in JULY!!! Meanwhile we saw at Bradstreets clinic on Monday, and left with a prescription for every thing Federico had recommended which was then filled at Walgreens for the princely sum of £12!!! (OK, Bradstreet is in Florida, but we were there anyway for Growing Minds) So, I'll let you know how we get on but Dr Fell seems a sound and informed person who has little interest in autism per se but clearly knows that many autistic people are affected by a generic inflammation that permeates the whole digestive tract. Steph x > > Hi All, > > Can anyone tell me how Dr Fell helps exactly? Does he do endoscopies? > What kind of drugs/supps he prescribes? > Would we be better seeing Wakefield's friend in instead of Dr Fell? > > My little one started complaining about painful stomach so I am > considering all options. > > Thanks in advance. > > Remis > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2007 Report Share Posted December 5, 2007 Steph, As per below…. Meanwhile we saw at Bradstreets clinic on Monday, and left with a prescription for every thing Federico had recommended which was then filled at Walgreens for the princely sum of £12!!! Do you think it helped? Did it subside? Is it more under control now with less flare ups? I feel that if we could get that under control with Tom all the chelation business will be much quicker and more efficient. Thanks Remis -----Original Message----- From: Autism-Biomedical-Europe [mailto:Autism-Biomedical-Europe ] On Behalf Of stephaniesirr Sent: 05 December 2007 19:24 To: Autism-Biomedical-Europe Subject: Re: Dr Fell In terms of recognising the gastro problems specific to autism, might be quicker with Arthur Krigsman or Federico Balzola. However, Dr Fell is a good doctor and will prescribe similar treatment if he thinks it's necessary - endoscopies etc. THe NHS does not seem to prescribe granular Pentasa so if your child can't swallow tabs, you would get Salofalk but it's the same generic drug. I like Dr Fell but should add the caveat that he is now secondarily examining the slides that Federico created. THe gastro in Nottingham said " no need for treatment " , Dr Fell said " I'd like to see them because Tom presents externally with digestive problems " and now we're in limbo waiting for the result. This is a scope done in JULY!!! (OK, Bradstreet is in Florida, but we were there anyway for Growing Minds) So, I'll let you know how we get on but Dr Fell seems a sound and informed person who has little interest in autism per se but clearly knows that many autistic people are affected by a generic inflammation that permeates the whole digestive tract. Steph x > > Hi All, > > Can anyone tell me how Dr Fell helps exactly? Does he do endoscopies? > What kind of drugs/supps he prescribes? > Would we be better seeing Wakefield's friend in instead of Dr Fell? > > My little one started complaining about painful stomach so I am > considering all options. > > Thanks in advance. > > Remis > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2008 Report Share Posted January 19, 2008 Will post more later, but he has prescribed us medication for reflux and bowel inflammation, thanks for all your posts, I am clearing his bowels this w / end so have not been giving him medication for bowel inflammation, but will start again and will also start on the relux meds as well, we too were advised to start with reflux meds first then introduce bowel inflamation, we need a bowel yahoo group. Celia, I just hadn't realised you knew all this, love to you both Lara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2008 Report Share Posted March 9, 2008 Hi we had a second app with Dr Fell last Friday and he x-rayed Charlie and confirmed he has constipation and I think he said " baggy bowel " ( after a colon transit test). Anyway he said he isn't that bad and was talking about laxitives but I said I wanted to get to the route of the problem which has gone on for 51/2 years. So he is going to do an endoscopy and I really didn 't have to fight for it - I was amazed. I thanked him for being the first dr that Charlie has seen on the NHS that has listened to me and is going to do something. Peta -- In Autism-Biomedical-Europe , Rabab Abedi wrote: > > > Hi > Our daughter was scoped (endoscopy and colonoscopy) last week by Dr Fell. We have found him to be very sympathetic to Sofia's health issues and very willing to listen and take note of our concerns about her yeast etc. He did not find anything during the scope or in the biopsies. He said that when that happens and the child is often getting loaded, he would usually conclude that it is a problem with bowel motility or irritable bowel syndrome. He was not very keen on testing gut permeability as he said it was no reliable test for this. > I also found that Sofia's behaviour imporved a lot on the days following the scope. She reacted to the biopsy to develop a very high fever (apparently that happens sometimes when the bacteria in the gut is disturbed) and during this time she was more alert and responsive than she has been since she first regressed into autism. I think the improvement in behaviour was due to the fasting beforehand and it has made me seriously consider trying an elimination diet for her as I think something in the current GFCF diet does not suit her. > Rabab > > > To: Autism-Biomedical-Europe@...: Moroza-@...: Fri, 7 Mar 2008 14:41:00 +0000Subject: RE: Dr Fell > > > > > > > We've just come back from Tom's endoscopy. I don't think he does an intestinal permeability test. He doesn't do the scoping so we didn't see him yesterday and so I didn't have any discussion about constipation and yeast. Doctor Fell was careful to tell us that there was no link between autism and gut disorders. He seems nervous that so many patients with autism from all over the country are coming to see him. he looks at their gastro problems and ignores the autism and investigates/ treats accordingly. I don't think he has any views that are different from mainstream except that he is helping our kids. > I was very nervous about Tom having a general anaesthetic and sort of expected a really bad reaction but Tom seemed to wake up from the anaesthetic tons better!!!! That was yesterday and today he is the best he's ever been. What could that be? Pain relief? Oxygen? They didn't see anything at all down there by the way, > SARA > > > -----Original Message-----From: Autism-Biomedical- Europe [mailto:Autism-Biomedical- Europe ] On Behalf Of dava mcgrathSent: 07 March 2008 12:20To: autism-biomedical-europe@...: Dr Fell > > > > > > > > > > Hi has anyone been to see Dr Fell we are seeing him tomorrow. Does he do an intestinal permebilty test. Has anyones children been scoped by Dr Fell? Does he agree that constipation can be caused by yeast?Would be grateful for any helpthanksdave > > > > > She said what? About who? Shameful celebrity quotes on Search Star! > > > > > > > > _________________________________________________________________ > Telly addicts unite! > http://www.searchgamesbox.com/tvtown.shtml > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2008 Report Share Posted March 9, 2008 Hear hear -----Original Message----- From: Autism-Biomedical-Europe [mailto:Autism-Biomedical-Europe ] On Behalf Of stephaniesirr Sent: 09 March 2008 18:31 To: Autism-Biomedical-Europe Subject: Re: Dr Fell He is treating our Tom but his views on the slides of Tom's gut differed from those of Federico Balzola. SO he is treating him more because Tom is in obvious pain than because his medical view is that the slides are an issue. He thought one slide looks dodgy but only marginally. this is why we do need to be very careful to take our kids because they have gut issues, not because they have autism. It may be bleedin' obvious that autism and the gut are linked but I would hate to put him off treating children for fear of becoming the next AW. OUr view is that Tom has a lowgrade, chronic inflammation probably throughout his body - but certainly gut throughout and maybe brain. Nobody in teh current NHS Is going to be queueing up to prove the link with this kind of wandering, low grade but painful condition, which seems to stop all gut motility in its tracks. This is why we should all independently approach our MPs if this is an issue for us. I got a sympathetic hearing from mine Huge sigh! Steph > > We've just come back from Tom's endoscopy. I don't think he does an > intestinal permeability test. He doesn't do the scoping so we didn't see > him yesterday and so I didn't have any discussion about constipation and > yeast. Doctor Fell was careful to tell us that there was no link between > autism and gut disorders. He seems nervous that so many patients with > autism from all over the country are coming to see him. he looks at > their gastro problems and ignores the autism and investigates/ treats > accordingly. I don't think he has any views that are different from > mainstream except that he is helping our kids. > I was very nervous about Tom having a general anaesthetic and sort of > expected a really bad reaction but Tom seemed to wake up from the > anaesthetic tons better!!!! That was yesterday and today he is the best > he's ever been. What could that be? Pain relief? Oxygen? They didn't see > anything at all down there by the way, > SARA > > > Dr Fell > > > > _____ > > > > <http://geo.yahoo.com/serv?s=97359714/grpId=13777863/grpspId=1705061104/ > msgId=40845/stime=1204891326/nc1=5191945/nc2=5191951/nc3=4025304> > Hi has anyone been to see Dr Fell we are seeing him tomorrow. Does he > do an intestinal permebilty test. Has anyones children been scoped by > Dr Fell? Does he agree that constipation can be caused by yeast? > Would be grateful for any help > thanks > dave > > _____ > > She said what? About who? Shameful celebrity quotes > <http://www.msnsearchstar.com> on Search Star! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2008 Report Share Posted March 9, 2008 Dave Go carefull with Dr Fell, he is a good gastro & we need to keep him treating our childrens bowels. He will not test the gut it is not his job, he will not advise about yeast it is not his job, he is purely a gastro. He is not an autism specialist. He will take medical history & during the consult will look at your child's tummy. It is up to him what action he wants to take next depending on your child's bowel history. So forget the autism while you are there, get that bowel sorted as well as you can. intestinal permebilty tests can be done with IDWL or the french lab. Lara > > > > We've just come back from Tom's endoscopy. I don't think he does an > > intestinal permeability test. He doesn't do the scoping so we didn't see > > him yesterday and so I didn't have any discussion about constipation and > > yeast. Doctor Fell was careful to tell us that there was no link between > > autism and gut disorders. He seems nervous that so many patients with > > autism from all over the country are coming to see him. he looks at > > their gastro problems and ignores the autism and investigates/ treats > > accordingly. I don't think he has any views that are different from > > mainstream except that he is helping our kids. > > I was very nervous about Tom having a general anaesthetic and sort of > > expected a really bad reaction but Tom seemed to wake up from the > > anaesthetic tons better!!!! That was yesterday and today he is the best > > he's ever been. What could that be? Pain relief? Oxygen? They didn't see > > anything at all down there by the way, > > SARA > > > > > > Dr Fell > > > > > > > > _____ > > > > > > > > <http://geo.yahoo.com/serv?s=97359714/grpId=13777863/grpspId=1705061104/ > > msgId=40845/stime=1204891326/nc1=5191945/nc2=5191951/nc3=4025304> > > Hi has anyone been to see Dr Fell we are seeing him tomorrow. Does he > > do an intestinal permebilty test. Has anyones children been scoped by > > Dr Fell? Does he agree that constipation can be caused by yeast? > > Would be grateful for any help > > thanks > > dave > > > > _____ > > > > She said what? About who? Shameful celebrity quotes > > <http://www.msnsearchstar.com> on Search Star! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2008 Report Share Posted March 10, 2008 Hi and Sara We had the same experiences as both of you. , also had a high proportion of Eosinophils when scoped by NHS Grampian when she was 4. Never treated, and we were never told there was anything wrong. This is now being addressed with mesalazine..... And Sara, when was scoped in New York she was tonnes better as well afterwarsd astonishingly so!! Let me tell you an example. We had the monitor on for the Capsule Endoscopy and we had to go back to Arthurs for 5pm to remove it. When we left the taxi hit a wall!! Not badly but he had to wait for a new cab. We had used this cab a lot whilst staying on Long Island and for anyone that knows that place, lotsa traffic at rush hour on the Expressway and all the other roads coming out of town. I had s Toast and bacon with me, she hadnt eaten at this stage for 36 hours. We sat in the cab me and her for nearly 3 hours..... She was calm, playing with her toys and having her toast. The taxi driver by this time was about to have a heart attack. It was amazing. We didn't get back to our Hotel til after 8 and had been perfectly well behaved it was so very weird! This is terrible the lack of treatment our kids get it never fails to shock me..... Luv Caroline x Quote Link to comment Share on other sites More sharing options...
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